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ALICIA'S JOURNEY WITH FA

Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.



Saturday, November 29, 2008

Day +163


Well we are all alone again. Denise and Cassie left this morning around 8am. Alicia was asleep so the good byes were not that bad. Denise did wake her up to get one last hug and then Alicia went right back to sleep. She slept til after noon today, she was just so wore out.
I can not believe it is almost December. It does not feel like we have been here for six months. November went by soooooo fast with all of the excitement of her Birthday, Mommy, Daddy and Ne Ne and Cassie. I just pray December goes by as fast and we are on our way home. We want to go home more than ever now. Seeing our Family and with the Holidays will make me stay on top of Dr Davies so we can go HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!! If not for good then just for a few days during Christmas. I do not even want to begin to think how it will be possible with the cost of going home and then turn around and go home a few weeks later for good. I just hope she can work towards us going before Christmas and staying til it is time for her return check up. I do not even know what it entails to coordinate us going home since they have not even mentioned it.
Next week we only have to be at the Hospital on Friday so I hope to see Dr Davies then. The Home Nurse will be here at the RMH on Monday and Tuesday and Therapy is on Wednesday so Thursday is the only day we have free. I am kinda glad about that though because I heard there is going to be snow here in Cincinnati. My mom called this morning to tell me there is snow back home today.
I want to thank everyone once again for the awesome Birthday Alicia had again and Thanks Kelly and Alayne for the cute gifts you both gave Alicia last week she loved them.
I want to add a few pictures of our week to end this. Take care and please pray we will be home for Christmas!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This one is of Alicia and Cassie with their attitudes...................................
This is of the girls when we got out for a drive with Alicia, notice no cars around!!!!!!!!

2 comments:

Anonymous said...

Sorry you're back to being alone...Continuing to pray in Seattle! Praying for a Christmas miracle for your family!
Psalms 119:49-50 Remember the word unto thy servant, upon which thou hast caused me to hope. This is my comfort in my affliction: for thy word hath quickened me.
Prayer Bears

Anonymous said...

Continuing to lift up prayers!
Psalms 34:17-19 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles. The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit. Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
Prayer Bears